First Steps

So I must have sounded pretty down in the dumps in my last post, because I've had a lot of people reach out to me since it was posted :) Don't get me wrong, this past week has been really hard, but I am doing alright. Not wanting to be alone at the hospital had more to do with knowing that I wouldn't have anyone to grab me lunch/dinner, or help push Casen's wheelchair and pumps, or take shifts with him during the night, and less to do with me being worried about actually being lonely. There is so much commotion in Casen's room all day that I don't have a chance to get too lonely.

Anyway, a quick update on Casen since it is late and sleep is hard to come by in this place! Seriously, last night was our worst night here in terms of sleep. It seems as though a new medicine is added to Casen's regimen each day. Casen is currently taking 7 different medications, all of which are scheduled at different times throughout the day and must be taken multiple times in a day. Four of these medications are antibiotics which go through his PICC line and make a horrendous beeping sound until the nurse comes in to turn it off.  We were both woken up at least once an hour last night to either take an oral medication, take his vitals, or to wait until his nurse came in to silence the machine and flush his line. My poor nurse was definitely getting the crankier side of me last night.

Yesterday and today have been really good days for Casen! Everyone who saw him today has commented on the noticeable change that has taken place in his demeanor.  Just before lunch yesterday, Casen got the clear to eat again. He of course requested mac and cheese and we were both so eager to give it a try, but by the time it got to his room he had fallen asleep for a nap. He didn't sleep too long though and was super excited to wake up to mac and cheese.  Even better, he kept it down!  His mobility has been pretty limited until today because of his pain and even more so because of his catheter, but we spent a lot of time yesterday building train tracks, racing cars, coloring, and doing puzzles in his bed. 

After pushing the issue enough times, I was able to convince the doctors to remove his catheter this morning. What a difference that has made! It had really been bothering and causing him pain, and his desire to get up and get moving substantially increased as soon as it was removed. Casen was also weaned from his last IV pain medication today, so the only medications running through his PICC line now are antibiotics.  Since these aren't on a continuous dosing schedule, we are able to unhook Casen from the pumps while he isn't actively receiving a dose.  Without all the pumps and tubes to deal with, he took his first steps in a week!  It truly was like witnessing his actual first steps.  As he was walking around he would just laugh and say "dizzy, dizzy" because he was so unstable.  It is going to take a few days to regain his muscle strength.  I can tell that he is still in pain, but Casen came back to life today and it was so great to see.  We spent much of our day playing in the playrooms and going on rides around the hospital. He laughed a lot and was so proud of himself for all of the achievements he made today. Love that kid!!

Now that antibiotics are the only medications being administered through his PICC line, the possibility for us to go home has opened up!! We still have to wait and hear what the infectious disease team has decided tomorrow, but I am hoping that we will be able to get out of here tomorrow or Thursday. I've been practicing with the nurses today how to care for his PICC line and administer his anitbiotics at home, so now my fingers are crossed that we will get the go ahead to bust out of this place! 

Well that didn't turn out to be a particularly quick update, but it's been such a good day that I had to share it all :) A big thanks to everyone for their continued prayers.